East Asian Arch Psychiatry 2014;24:110-6

THEME PAPER

Prof. Larry Davidson, PhD, Program for Recovery and Community Health, Department of Psychiatry, Yale University School of Medicine, New Haven, Connecticut, United States.
Prof. Samson Tse, PhD, Department of Social Work and Social Administration, The University of Hong Kong, Pokfulam, Hong Kong SAR, China.

Address for correspondence: Prof. Larry Davidson, PhD, Program for Recovery and Community Health, Department of Psychiatry, Yale University School of Medicine, 319 Peck Street, New Haven, CT 06513, United States 
Tel: (1-203) 605 6074; Fax: (1-203) 764 7595; email: larry.davidson@yale.edu

Submitted: 26 March 2014; Accepted: 23 May 2014

pdf Full Paper in PDF

Introduction

“The idea of madness should by no means imply a total abolition of the mental faculties. On the contrary, the disorder usually attacks only one partial faculty…A total upheaval of the rational faculty…is quite rare” (Philippe Pinel, 1794).¹

The notion of mental health “recovery”, that is, recovery from and in the midst of a serious mental illness,² is taking root in Hong Kong. In addition to prominently displayed posters and other artwork in mental health settings that introduce the concept of mental health recovery to persons with serious mental illnesses and staff alike, there are initial efforts to train and hire peer staff (staff who are themselves in recovery) and educate existing staff about the values and principles of recovery-oriented practice.^3,4 There also appears to be increasing involvement both of persons with serious mental illnesses (referred to as “service users”) and family members in advocacy, research, and quality improvement initiatives.^5,6

It is important to note, though, that there are important differences in the cultural values and societal structures that hold sway in Hong Kong that pose new and different challenges to implementation of a recovery vision versus those typically encountered in the United States or United Kingdom. In the following sections, we would like to offer a few observations about the status and future of recovery and the development of recovery-oriented practices within the Hong Kong context, and suggest a few directions for the consideration of our valued colleagues as they go about this challenging, but extremely important, work of assisting persons with serious mental illnesses to regain dignified and meaningful lives in their local communities.

The Importance of Working with Families

One obvious difference between Hong Kong and the West is its deeply-rooted hierarchical and collectivist structure that emphasises social harmony, deference to elders and people in positions of authority (e.g. physicians), filial loyalty, and the family as the primary social unit.^3,7 This set of values, beliefs, and practices contrasts with the western emphasis on individualism, autonomy, self-determination, personal choice, and the person as the primary unit of focus. As we have pointed out in previous publications,^5,8 these differences call for significant changes in the ways in which mental health care is planned, delivered, and evaluated. Rather than a primary focus on the promotion of collaborative decision-making between practitioners and the person using services, Asian cultures may prefer shifting, at least at first, to collaboration between mental health practitioners and the family unit to which an individual belongs.^9,10

We have some experience with such a shift in the West, particularly in ethnic minority communities,¹¹ in which our ordinarily person-centred approach to decision-making is broadened to include family members and other influential “natural supports” (e.g. church elders and respected community leaders¹²). In Hong Kong and other Asian contexts, it probably makes more sense, though, to assume family-centred care planning as the default condition, and to consider modifications to this process based on individual needs and preferences.

In addition to the need for making modifications in care planning, several other concerns arise in the Hong Kong context in shifting to a family-centred model. Again, while we are familiar with these issues to a certain extent in the West, their prevalence and degree of influence differ significantly in the East, as does the magnitude of the challenges they pose. First and foremost is the issue of how mental illnesses are viewed in Asian cultures.^13,14 The West has its fair share of discrimination against persons with serious mental illnesses, and substantial efforts are underway to combat and address these prejudices, as they are considered to be the primary obstacle to recovery.¹⁵ Such anti-stigma campaigns are only now being considered in Hong Kong,^16,17 and the nature of discrimination to be addressed seems different.

In both cases, persons with serious mental illnesses are afforded only second-class status as members of their community. Recognition of their diminished status has moved western countries to promote the concepts of “social inclusion” and “citizenship” in relation to mental health status (on par with persons with other disabilities), calling for concerted efforts to enable such persons to reclaim their full citizenship despite having an ongoing mental health disability.^18-24 These approaches are primarily rights-based, however, and have little cache in Asian cultures in which citizenship has different connotations, linked less to issues of personal choice or sovereignty and more to a sense of shared responsibility.^25-27

In Hong Kong in particular, the social status of persons with serious mental illnesses seems to be more similar to that of children or individuals who can only manage simple procedural tasks like cooking and cleaning than to that of other politically or economically ‘marginalised’ groups in the West.²⁸ This view brings its own specific challenges and calls for its own specific solutions. A dominant trend in Hong Kong seems to be acceptance of a narrow biomedical model of serious mental illnesses — with little attention paid to psychosocial influences — in which the person is viewed as having an unstable mind.^29,30 Stability is to be restored primarily through the use of medications, at which point in time the person may derive additional benefit from structured rehabilitation programmes that aim to teach skills. Families and service users alike look primarily to physicians to restore an individual’s mental stability and faithfully follow mental health professionals’ advice to avoid stress or taking on too many responsibilities in order to avert relapse.

In some ways, this challenge is similar to what the American psychologist and service user leader, Patricia Deegan, has described as “the quest for chemical balance”.³¹ After being told for decades that what they were suffering from was “a chemical imbalance in the brain,” many service users in the United States became stuck in a passive, complacent stance — a form of learned helplessness — towards their condition and their lives in general, feeling incapable of pursuing recovery until they were first brought into “balance” by the right combination of medications (which, for many people, remains to be achieved). Such a quest seems endemic and widespread in Hong Kong and is only magnified in its potency by the added concern that relapse would not only be unsettling and distressing to the person, but would also upset the family. In taking steps to reclaim aspects of his or her life, the person not only risks his or her mental stability, but threatens the family’s social harmony as well. One can well imagine how this added pressure might complicate a person’s chances of recovery, especially when we consider that recovery involves hard work in regaining functioning in areas of diminished capacity, as well as identifying and developing previously unexplored strengths, through an inevitable process of trial and error.

This suggestion is based on the recognition that long-term mental health conditions are not like acute illnesses; simply resting, taking medication, and avoiding stress are not sufficient for persons with serious mental illnesses to achieve optimal health outcomes. Rather, in serious mental illnesses, improvements come about through incremental steps that the person takes for building on his or her remaining areas of health and competence to compensate for, and gradually regain functioning in, those areas most affected by the illness.³² Just as persons with visual impairment learn to use their other capabilities in combination with environmental modifications (e.g. Braille, service dogs) to compensate for not being able to see, persons with serious mental illnesses can use those parts of their minds that are not compromised by the illness, in combination with the support provided by trusted others (e.g. family members) and rehabilitative interventions, to compensate for their areas of difficulty. In addition, through these activities and the learning that occurs in naturally occurring environments, brain functioning may be restored even in these affected areas.

So, given that many families believe their loved ones to have brain-based disorders, perhaps these families could also be educated about neural plasticity and the capacity of the brain to regain functioning through a combination of medication and exposure to new experiences through which learning takes place. Importantly, for these new experiences to generate learning and to benefit the person’s brain, the experiences have to challenge existing competencies and promote the development of new ones, or at least increase competence in existing areas of strength. In other words, simply “keeping people busy” by engaging them in relatively meaningless, perseverative activities benefits neither the brain nor the person. Similarly, keeping people confined to hospitals for long periods of time does not prepare them for living a meaningful life in the community. Rather than getting them “ready” to face the challenges of community life, whatever skills they had prior to admission are only likely to atrophy in institutional settings in which those skills can no longer be used. Well-informed families who only want what is best for their loved one can become effective advocates when they come to see that mental instability is not an all-or-nothing proposition and that the brain can be exercised and can regain functioning over time when the person is provided with a rich, stimulating environment and is challenged to pursue those activities he or she finds most meaningful.

Rethinking the Myth and Misperception of Readiness

As mentioned above, closely associated with the concept of mental stability appears to be the issue of readiness. We suggest that the need to wait until the person is ready — which means he or she has achieved a sufficient degree of mental stability — is as illusory, and can be as potentially destructive, as Deegan’s “quest for chemical balance.” How can you determine a person’s degree of readiness? And, more importantly, how is a person ever to become ready to be an active participant in his or her own life by being passive, inactive, and absolved of all responsibilities?

Certainly, many people experiencing acute episodes of psychosis, disorganisation, distress, or depression may need time to rest and convalesce; for this purpose, hospitals or other alternative safe and structured settings (e.g. respite programmes) may be perfectly appropriate. But those are short-term functions associated with acute episodes. Most adults with serious mental illnesses only periodically have acute episodes like those described above. They spend the vast majority of their lives between episodes; episodes that, over time, also typically become further and further apart.³³ Outside of such acute episodes, waiting for a person’s residual symptoms or impairments to go away before he or she can resume his or her life is like waiting for a person who is blind to regain his or her eyesight or a person who is deaf to regain his or her hearing. If these are the criteria for readiness, we can see that many people will never achieve it, and will lead significantly diminished lives as a result.

This perspective, which may strike the reader initially as nonsense, is at the heart of the notion of “being in recovery”² and the distinction between “clinical recovery” and “personal recovery”.³⁴ If all the reader is familiar with is the notion of recovering from a mental illness or being recovered, then the discussion above is not likely to make much sense. But the notion of recovery that is at the heart of the so-called “recovery movement” is the notion that you can live a full and meaningful life in the absence or in the presence of a mental illness; that it is possible to live a gratifying life in the community even when disabled by a mental illness.

Most of us would agree that it would be better for the person to be symptom- and impairment-free, that a life in the absence of symptoms is at least easier than a life in the ongoing presence of symptoms. But this obviously is not a matter of choice. Each of us must make the most of the hand we have been dealt in life, and we currently do not have treatments that will totally eliminate the symptoms and impairments associated with serious mental illnesses for many people. The recovery movement is primarily for these people, the ones who have no or little choice but to live their lives in the ongoing presence of a mental illness. It is for these people that the disability model makes the most sense, and for these people, for whom the requirement of readiness can be the most deleterious — because by many of the criteria being used, they will never be considered ready and their lives will, thus, be placed permanently on hold.

It may be useful to offer a concrete example. Many persons with serious mental illnesses hear voices that are described clinically as auditory hallucinations. One criterion of readiness might be that the person stops hearing such voices. But for many people who hear voices, the medications currently available are either not very effective in reducing the voices and / or have such onerous side- effects that the person may prefer hearing the voices to suffering the consequences of long-term medication use. For such people, insisting that they stop hearing voices before they can be discharged from hospital or before they can return to school or get a job is like insisting that a person with mobility impairment stop using a wheelchair and be able to walk. Except in this case we also have to consider two additional facts.

First is the fact that many people who hear hallucinated voices do not meet the criteria for having a mental illness of any kind. That is, while they may share some experiences in common with persons diagnosed with schizophrenia, their ability to function on a day-to-day basis is not compromised by these experiences and there are no other indications that they suffer from a mental illness. It, apparently, is possible to live with hallucinated voices, and the Hearing Voices Movement that is rapidly growing across the globe attests to the commonality of this experience.^35-40

Second is the fact that, while there is no research suggesting that prolonged unemployment reduces hallucinations, there is a consistent body of research going back to the time of Pinel suggesting that working does reduce voices, along with other psychotic symptoms.^41-44 If becoming employed reduces a person’s distressing experiences of hearing voices (as well as helps to keep that person out of hospital⁴⁵), what sense does it make to insist that the person stop hearing voices before she or he can leave the hospital or get a job? Rather, it would seem that helping people learn how to live constructively with the voices they hear, by assisting them to make those voices less disruptive and distressing would be a more evidence- based and effective approach. This is, in fact, the premise of current highly regarded cognitive-behavioural approaches that can be offered on an outpatient basis.^46-48

Embracing the Non-linearity and Uniqueness of One’s Recovery Journey

A final point that is crucial for understanding the above discussion involves a concept that is, unfortunately, equally misunderstood in the West as well as in the East. This is the concept of “non-linearity.” First introduced by Strauss et al⁴⁹ in their seminal 1985 article “The course of psychiatric disorders III: longitudinal principles”, the concept of non- linearity suggests more than just that some people will have setbacks in their recovery, that recovery can be three-steps- forward, two-steps-back kind of process. It is not only the case that recovery can have its “ups and downs” as would be suggested by how the concept of non-linearity (非直線性) has been translated into Chinese, but recovery also occurs in unexpected and unanticipated ways, ways that would not be predictable based on any prior knowledge. In this way, the concept of non-linearity builds on Strauss and Carpenter’s earlier work⁵⁰ in showing how domains of functioning in schizophrenia are only “loosely linked”.

What this research demonstrated was that people could make strides in one or more domains of functioning (e.g. hospitalisation, employment) while not making concurrent strides, and perhaps even having decreases in functioning, in other domains (e.g. symptoms, social relationships). In our example above, it is possible for a person to obtain employment and experience decreases in the voices he hears, thereby, needing to be in the hospital less often. This does not mean, however, that he will also experience decreases in other symptoms or that his social functioning will improve at the same time. In fact, it is possible that he might withdraw more from social contact in order to withstand and recoup from the social exposure he has had to tolerate on the job and that he might become more, rather than less, paranoid as a result. In this way, recovery is not a linear, upward sloping path by which the person regains mental stability across the board all at the same time. It is more like mountain climbing (according to Strauss, personal communication) or like the Chinese idiom “以退為進”(“retreat in order to advance” in English translation) where the person looks for footholds wherever they can be found in proximity, sometimes having to go downward before going up because that is where the nearest opportunities lie.

A favourite example of this principle offered by Strauss (personal communication) was the woman who was hospitalised in his unit in the 1970s and who requested that she be able to leave the unit in order to attend rehearsals for a community theatre production. The staff viewed her primarily as a safety and elopement risk, and were convinced that she was simply “too sick” to participate in a play. She could barely function in a psychiatric unit and was persistently suicidal. How could she possibly assume such a demanding and public responsibility? After talking with the woman, Strauss became convinced that acting and performing were her life’s passions and that these were among the few things she had left that were keeping her alive. While he did not know whether or not she would be able to act in the play, or what consequences this would have on her psychiatric status, he was convinced that denying her this opportunity would certainly not be helpful. So, he took a chance and accompanied her to her first rehearsal.

Not only did this woman “pull herself together” to appear perfectly ordinary and inconspicuous on the bus, but she was like a different person throughout the rehearsal session, was consistent in her attendance and performance, and completed the series of performances with no untoward events. At the same time, her functioning in the unit improved, her suicidal thoughts and urges to self-harm decreased, and she was successfully discharged shortly following completion of the play.

Another example addresses what appears to be a widespread concern in Hong Kong at the present time. This is the example of the withdrawn and apathetic patient who may be described as having prominent negative symptoms and who appears to be unable, or unwilling, to take an active role in his or her own recovery. The person is not interested in identifying goals, does not take proper care of him- or her-self in terms of personal hygiene and other activities of daily living, and appears only to be capable of smoking, drinking tea, watching television or listening to the radio, and sleeping. While this profile is not itself new — it has been described at least since the time of Kraepelin, and was described by Andreasen⁵¹ as a result of a “burning out” disease process that leaves an “empty shell” in place of what a person used to be — it is a profile that is of increasing concern to hospital staff and administrators.

What, then, can staff do to assist such people to emerge from their cocoon of isolation and inactivity? If anything, in such cases people are more likely to be on too much medication rather than too little. And if they do not participate in group activities, what possible benefit could they derive from them? Two brief stories suggest that there might be another alternative to the existing linear, treatment first and recover a life second, model. First was the woman who complained to one of us (first author) that her job coach was refusing to help her accomplish the goal she had set, which was to get a job at a high-end, downtown department store. When a meeting was convened to address the stalemate, the job coach explained that she would not set up a job interview for this woman because she refused to wash her hair and to put on clean clothes. The woman’s response was that the job coach wanted her to get all dressed up, but yet was not willing to take her to any place, so why should she bother? What did she need to wash her hair or change her clothes if she was not going to go anywhere? In the end, she agreed to clean herself up only when the interview had actually been scheduled, insisting that the job coach make the first move.

Finally, there is the story of the closing of mental asylums in Italy in the 1960-70s by Franco Basaglia and his colleagues. Based on his own clinical experiences, as well as on his reading of the now-classic work of the sociologist Erving Goffman⁵² on the effects of institutionalisation, Basaglia was convinced that it was the hospital rather than the mental illness that was causing some of his patients to adopt the profile described above, of being passive, complacent, apathetic, and unwilling or unable to participate in life (to the point of catatonia). Basaglia’s solution was to close the hospital, with the motto of his programme of reform becoming “freedom is therapeutic”.^53,54 In doing so, he found that what these patients had needed was not more treatment, but rather more opportunities; opportunities to do what was meaningful for them, rather than what was considered important for them by the staff. What the patients had lacked, if anything, was trust or confidence in the staff that they would actually assist the person to participate in activities that he or she would enjoy, activities that had been conspicuously absent within the context of the hospital. But when offered such opportunities, particularly opportunities to work for a decent wage, these same patients became functioning employees in a range of social enterprises and businesses many of which remain in operation to this day.

In two of these cases, practitioners had to take leaps along with their patients in believing that recovery was possible in a non-linear, perhaps non-conventional, manner. But life, also, is non-linear, and in so far as recovery is about reclaiming a meaningful life in the face of mental illness, it makes sense that recovery, too, would reflect this non- linearity. It is difficult to know ahead of time what a specific person will respond to or find worth getting up off of the coach for, but it appears to be the case that recovery is promoted more by reducing restrictions on persons’ freedoms and opportunities than by imposing more limitations (reflecting what has been found to be true of human development in general by Sen⁵⁵). Deegan⁵⁶ has eloquently pointed out, based on her own first-hand experience, what may appear to practitioners or family members to be inactivity can actually represent a Herculean effort to protect oneself from further disappointment: “The professionals called it apathy and lack of motivation. They blamed it on our illness. But they don’t understand that giving up is a highly motivated and goal-directed behaviour. For us, giving up was a way of surviving. Giving up, refusing to hope, not trying, not caring: all of these were ways of trying to protect the last fragile traces of our spirit and our selfhood from undergoing another crushing.”

Practitioners, and family members, are by and large well-meaning and caring people who desperately want to help, both to relieve suffering and to improve functioning. They may, though, not fully appreciate the degree to which institutions and institutionalisation “crush” (in Deegan’s words⁵⁷) the spirit and selfhood of many persons with serious mental illnesses. A major challenge that lies ahead is that these practitioners and family members — indeed even persons with serious mental illnesses themselves — will not begin to believe that reclaiming mental stability and a meaningful life can be a much more variegated, complex, multi-dimensional, and non-linear process until they see evidence of it in person.

Over the years, personal recovery, or being in recovery with a serious mental illness, has proven to be one of those things that people do not believe until they see it first-hand, with the proof of the pudding being in the tasting. This is one reason that makes it all the more important that recovery champions in Hong Kong continue to train and hire peer staff, as they provide tangible proof that recovery is possible and that recovery is not necessarily about total symptom remission, total restoration of functioning, or total mental stability (which very few, if any of us, possess). While some peer staff have fully recovered, others are able to live on their own, to work, and to make valuable contributions to the lives of other people, all the while continuing to live with a mental illness themselves. In addition to offering hope for recovery, role-modelling the importance of self-care, and supporting service users in participating in meaningful roles — both inside and outside of their families — these peer staff are living evidence of the non-linear nature of recovery.^58-60

Conclusion

Since its inception, personal recovery has been a grassroots phenomenon — pursued, sustained, and defined by persons with first-hand experiences of living with a serious mental illness. These people have suggested that each person’s recovery is so unique that it is not possible to determine beforehand what any one individual’s recovery is going to involve.⁶¹ It is important to emphasise that the picture of recovery that is emerging in the West does not offer one single solution that will fit all people. As a bottom-up creation, recovery is much more likely to look different in different cultural and community contexts, varying in terms of social environments as well as in terms of individuals.

Appreciating the diversity necessarily involved in such a concept,⁶² we suggest that, for recovery to flourish in Hong Kong, it will be of paramount importance for persons with serious mental illnesses, their family members, and mental health practitioners to enter into open, respectful discussions (or trialogues, following the Austrian tradition⁶³) about what each party is hoping to accomplish through their use, or provision, of mental health services. Keeping in mind that all parties may start out with a relatively limited or constricted vision of what is possible for a person living with a serious mental illness, incremental progress, in a non-linear fashion, remains possible for everyone, as well as for the system of care as a whole.

In this way, we suggest that the key strategy in implementing recovery-oriented care is not simply transferring an approach to recovery that was established in one setting to a different location, but rather facilitating a dynamic interplay between the core values of this approach (e.g. respectful, strength-based, hopeful) and the particular society in which it is being considered. The concept itself is flexible enough to be adjusted to fit the cultural context, as long as systems of care are willing to review and reconsider their long-standing assumptions about the courses and outcomes of serious mental illnesses based on the global body of scientific research that has accumulated over the last 40 years. In addition to this research, there is a growing body of practice-based evidence suggesting the value of such innovations as peer support, Wellness Recovery Action Planning, family-centred care planning, and the use of a strength-based approach to case management and other more traditional interventions. Recovery champions in Hong Kong can continue to adapt, implement, and, importantly, evaluate these and other recovery-oriented practices all the while that deeper systemic and community- level transformation efforts are underway.

The literal meaning of Hong Kong is “fragrant harbour.” We envision Hong Kong as a city filled with diverse fragrances, emitted from the growth of vibrant and varying stalks of hope, acceptance, and the explosion of meaningful opportunities for persons with serious mental illnesses to make valuable contributions to their community, recovering their lives as valued members of society as they recover and sustain their mental health.

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